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    Old 08-29-2008, 01:20 PM   #1
    Skimmy625
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    Lightbulb Help with test results - line 41

    See previous posts for my story...many physical symptoms - also had visable bite mark and rash, but never saw tick. Rash appeared about 5 weeks ago.

    Anyways...

    I just got by bloodwork back. Elisa was negative and western blot showed only one positive on IGG line 41. I have read mixed opinions on whether 41 indicates Lyme or not, because i guess it can show on other bacteria as well.

    I was tested about 5 weeks after my rash appeared. So I am thinking that it may be too soon to see positives on any other lines.

    Any opinions/advice????

     
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    Old 08-29-2008, 01:35 PM   #2
    Bill S
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by Skimmy625 View Post
    See previous posts for my story...many physical symptoms - also had visable bite mark and rash, but never saw tick. Rash appeared about 5 weeks ago.

    Anyways...

    I just got by bloodwork back. Elisa was negative and western blot showed only one positive on IGG line 41. I have read mixed opinions on whether 41 indicates Lyme or not, because i guess it can show on other bacteria as well.

    I was tested about 5 weeks after my rash appeared. So I am thinking that it may be too soon to see positives on any other lines.

    Any opinions/advice????
    Are you seeing a LLMD or using a family doc? Band 41 is of concern, but isn't even an Igenex positive result. I'm under the impression that antibodies can take some time to build up, but I don't know exactly how long...

    But having a bullseye type rash is pretty clear cut for Lyme's. You REALLY ought to find a LLMD and get treatment started ASAP; a LLMD will treat based upon symptoms as well as test results, unlike many regular docs who want a CDC-positive result before they try to treat.

    Last edited by Bill S; 08-29-2008 at 01:36 PM.

     
    Old 08-29-2008, 02:40 PM   #3
    Skimmy625
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    Re: Help with test results - line 41

    I had a reddish-purple type blotchy rash rather than the typical bullseye. My doctor started me on amoxicillin for 3 weeks the same day my blood test was done. So at least we have started that process.

    Do you suggest I still see an llmd?

     
    Old 08-29-2008, 03:49 PM   #4
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by Skimmy625 View Post
    I had a reddish-purple type blotchy rash rather than the typical bullseye. My doctor started me on amoxicillin for 3 weeks the same day my blood test was done. So at least we have started that process.

    Do you suggest I still see an llmd?
    Not everyone gets the classic bullseye; I didn't. Mine more resembled a red blotchy area that was mis-diagnosed as a spider bite...

    I would certainly look into a LLMD. Or if your doc can get you an Igenex blood test, that'd be a good start as well.

    Last edited by Bill S; 08-29-2008 at 03:49 PM.

     
    Old 08-29-2008, 07:41 PM   #5
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by Skimmy625 View Post
    Do you suggest I still see an llmd?
    It'd probably be a good idea. If you think your current doc is capable then go as far as you can with them. Your doc now might only treat you for a few weeks though. If you do have Lyme then most likely you will probably need more than that and you will need to treat it aggressively.

    What dose of amox per day? High or low?

    Take pictures of the rash, this will be part of your proof when switching/ changing from doctor to doctor.

    Last edited by luckeeluke; 08-29-2008 at 07:43 PM.

     
    Old 08-30-2008, 09:07 AM   #6
    Skimmy625
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    Re: Help with test results - line 41

    Unfortunately I never took a picture of the rash. What is still visible now is very small.

    So how exactly do I find an llmd in RI?

    I am on, I believe, 500 mg per day of amox. I have been feeling a lot better the last few days. SOO much more energy!! I still have about another 10 days on amox. I guess I'll just see how I feel. My primary dr did suggest another Lyme test about 2 weeks after I finish the amox. Its difficult because I really don't know what to think or believe. The Lyme test was basically negative, and the rest of my blood work was normal. Ugh so I don't really know what to do.

    Doea anyone know how much the Igenex test costs?

     
    Old 08-30-2008, 10:00 AM   #7
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by Skimmy625 View Post
    Unfortunately I never took a picture of the rash. What is still visible now is very small.

    So how exactly do I find an llmd in RI?

    I am on, I believe, 500 mg per day of amox. I have been feeling a lot better the last few days. SOO much more energy!! I still have about another 10 days on amox. I guess I'll just see how I feel. My primary dr did suggest another Lyme test about 2 weeks after I finish the amox. Its difficult because I really don't know what to think or believe. The Lyme test was basically negative, and the rest of my blood work was normal. Ugh so I don't really know what to do.

    Doea anyone know how much the Igenex test costs?
    Try here for a LLMD referral:

    [url]http://www.lymedisease[/url] a s s ociation.org/Doctor_Referrals.html

    remove spaces from address, since this board's software edits "curse words" and it blocked out the URL

     
    Old 08-30-2008, 11:14 AM   #8
    luckeeluke
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by Skimmy625 View Post
    I am on, I believe, 500 mg per day of amox. I have been feeling a lot better the last few days. SOO much more energy!! I still have about another 10 days on amox. I guess I'll just see how I feel. My primary dr did suggest another Lyme test about 2 weeks after I finish the amox. Its difficult because I really don't know what to think or believe. The Lyme test was basically negative, and the rest of my blood work was normal. Ugh so I don't really know what to do.

    Doea anyone know how much the Igenex test costs?
    Your primary care doc sounds alright, by what they are suggesting. I would look for an LLMD though and at least get an inital appointment with them. If your primary care offers another test (see if you can get another western blot) in a few weeks to a month from now, then definitely take it. The Lyme screening tests and the ELISAS seem to be trash most of the time. Only for some people do they show positive even if you have Lyme. The western blot tends to be better but still misses some folks.

    The igenex western blots IGG and IGM together I believe run $250-300, somewhere in that ball park at least. I have not goetten them myself so I'm not quite sure if that's a totally accurate figure.

    If the Amox makes you feel better get as much of that as you can with in reason. Keep telling your primary doc that it seems to be working and making you feel better, because it does seem to be helping you. I remember Amox did wonders for my symptoms early on, but I only had 2 or 3- 10 day periods of Amox spread out over a year or so. I thought I was having sinus infections and sinus pressure and I thought the Amox was helping with those. Soon after I stopped the Amox each time the sinus pressure, crushing day long headache, sinus aches, along with other strange symptoms would come rushing back every time.

     
    Old 08-30-2008, 04:21 PM   #9
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    Re: Help with test results - line 41

    Can I ask who is treating you in warwick area ? I am late/mis-dignosed and can't find a doc in all of new england that has a clue as to what to do with me. I have seen DR.Dnta, but he simply is not treating patients like he used to, and does not believe lyme is progressive and does not address co-infections- pretty much a blow off. I am considering going to one of the pro's in NY or SC being I have not gotten anywhere, but much worse in a year on oral doxy/tetra

     
    Old 08-30-2008, 04:24 PM   #10
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    Re: Help with test results - line 41

    see message below... sorry

    Quote:
    Originally Posted by Skimmy625 View Post
    Unfortunately I never took a picture of the rash. What is still visible now is very small.

    So how exactly do I find an llmd in RI?

    I am on, I believe, 500 mg per day of amox. I have been feeling a lot better the last few days. SOO much more energy!! I still have about another 10 days on amox. I guess I'll just see how I feel. My primary dr did suggest another Lyme test about 2 weeks after I finish the amox. Its difficult because I really don't know what to think or believe. The Lyme test was basically negative, and the rest of my blood work was normal. Ugh so I don't really know what to do.

    Doea anyone know how much the Igenex test costs?

     
    Old 08-30-2008, 09:05 PM   #11
    Skimmy625
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    Re: Help with test results - line 41

    I use my primary care dr right now. Her name is Dr. Farnum and she is in Cumberland, RI. I need to start looking for an llmd somewhere in the area. I am just waiting to see how I fell once i come off the antibiotics

     
    Old 08-31-2008, 07:23 AM   #12
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    Re: Help with test results - line 41

    Quote:
    Originally Posted by bleuskys View Post
    Can I ask who is treating you in warwick area ? I am late/mis-dignosed and can't find a doc in all of new england that has a clue as to what to do with me. I have seen DR.Dnta, but he simply is not treating patients like he used to, and does not believe lyme is progressive and does not address co-infections- pretty much a blow off. I am considering going to one of the pro's in NY or SC being I have not gotten anywhere, but much worse in a year on oral doxy/tetra
    I see Dr. D currently and have been doing much better than before I saw him. It's hard to say how long the better feeling will last; I'll take it as it comes. Some people don't get any better with his protocols and mindset, and some do. Like anything else surrounding Lyme and co-infections, there are multiple sides and outcomes to every story. It really depends on the infections and the individual that has them, ultimately what treatment works and what treatment doesn't work.



    Skimmy- At least your primary care doc seems somewhat knowlegeable and willing to intially treat for possible Lyme. That's a step that many folks can't even get to with any doctor they come into contact with. Definitely keep a look out for llmds though.

    you can post on Lymenet too. There is a place to post on there, your location, summary of what's been going on, etc. Someone will usually private message you with a reply of some sort and hopefully some helpful names of doctors and such.

    Last edited by luckeeluke; 08-31-2008 at 07:24 AM.

     
    Old 08-31-2008, 11:03 AM   #13
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    Re: Help with test results - line 41

    Thank you for all of your input!!

     
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